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My Epilepsy Story and My Year of Yes

Linda McClelland is a role model for many people in the Hinchinbrook community, but she would also like to be a role model for people living with epilepsy. Her epilepsy is mostly invisible to those that meet her, but the impacts are still very real and it took a number of years for her to come to terms with the ‘new normal’ of epilepsy and start a year of yes.

Like many people, it wasn’t obvious to Linda or her GP that she was living with epilepsy and for this reason, she is unsure how long she has actually had epilepsy. It started with injuries in her sleep. She went to her GP for a shoulder injury that just wasn’t healing. She wasn’t even sure how she had hurt herself.
 
Initially epilepsy was not something that was even considered. People just don’t talk about epilepsy and when they do, it is generally thought of as being the tonic-clonic seizures where you go stiff, fall to the ground and convulse. That wasn’t
happening for Linda.
 
When they discovered Linda was living with nocturnal epilepsy, there was a sense of shock and then there were many hurdles for her and her family to overcome.
 
As CEO of the Hinchinbrook Community Support Centre, she is a leader for 20 staff and numerous volunteers. Their aim is to support people in the community who are struggling with domestic violence, housing, transport, youth issues or just trying to make ends meet. Suddenly Linda had seizures that were not controlled and she was no longer able to drive. So she went from being the one that everyone relies on at the school, local sports clubs and the Community Centre, to having to rely on various people for support.
 
This included her 17-year-old daughter, who was going through the madness of year twelve and older women from her community as for the first seven months Linda didn’t have a license. As an independent woman, Linda found this inconceivable that her life could change overnight. The first seven months Linda didn’t have a license. She was coming to
terms with epilepsy and trying different medications.
 
“People don’t understand epilepsy, they are fearful, so they treat you with kid gloves. You don’t want epilepsy to run your life, but it can, so you end up just not telling people.”
 
Linda considers herself lucky that her seizures are now managed with medication. She sees a neurologist in Townsville once a year and has made changes to her very busy life. 
 
“I try to keep anxiety and stress under control and getting enough sleep is also important for me. Your life has to be holistic to maintain your health.”
 
“I also had to make some decisions about work hours and everything I was involved within the community. Work was life prior
to epilepsy, but I had a reality check and now do things in moderation. It just meant that I couldn’t work 20 hour days anymore and I had to step back from the P&C and sports clubs.”
 
It has taken time but Linda has learned to cut herself some slack. 
 
“For me something important is that I don’t blame everything on epilepsy. I don’t have to be superwoman anymore.”
 
“I also know when I am not having my best day. Epilepsy and the medications affect my mood. I always feel chronically tired but it’s the memory loss and the cloudy feeling that are the hardest. I call it the spectrum of confusion and I know some days it is better and some worse.
 
Some days I just need to decide that it’s not the best to be social or have that work meeting. I could know more on a subject
than anyone else in the room, but if I’m having a cloudy day I just can’t recall it.”
 
For Linda, epilepsy didn’t just bring difficult changes, but positive ones as well. 
 
“About two years ago I realised that I had given away a lot of my power to epilepsy. Fear that my epilepsy might get worse again was stopping me living life. I joined a gym, started walking regularly, developed better sleeping habits and looked at my diet. From there, I haven’t looked back. I decided this was my year of saying ‘yes’ and I have done things I had never done, even prior to epilepsy. I went on my first trip overseas to Europe (by myself), did a high ropes course and I decided to share my story of living with epilepsy. I wasn’t seeing life for all of the colours it had. It took time, but epilepsy is one thing that has opened me up to that.”
 
Living with epilepsy in regional Queensland can be very isolating. People don’t often talk about epilepsy, so most people won’t know someone with epilepsy to connect. There are extra challenges that Linda wanted to highlight.
 
“For people living in regional Queensland the impact of not having a license can be devastating. I live 35km from the closest town Ingham where I work and there is no public transport. For people living in regional areas having access to information about epilepsy and connections to local services would be really helpful.”
 
“Also ways to save on medications and transport and apps that could help with medication reminders and track sleep would help. A Facebook group to connect for support and as a place to ask questions and find information would also be helpful.”
 
Linda’s message for anyone struggling with epilepsy is: “Take control of your own health and don’t let it disempower you.  Don’t lose life waiting for the worst to happen. Seize every opportunity and don’t let epilepsy control you.”
 
Epilepsy is different for each person, but by sharing our stories, we feel less alone and also help educate people in the  community about living with epilepsy. To share your epilepsy story contact Karen on 07 3435 5000 or 1300 852 853.